Need advice!

Hi my name is Sara I have recently been diagnosed with ITP within the last two months...so far my doctor has had me on steroids for 3 weeks and that has not helped at all...so now I did my third round of rituximad today and my platletes count is at 4 k..I have had two platletes transfusion each one only raised my platletes up by 2 k and within a few days it drops back down...in the course of two months the highest my platletes have been is 18k.. my normal platletes count is around 2kand 4 k...I'm beginning to think that there's nothing out there that can help me...plz someone tell me that there is something out there that can help me...I'm only 28 years old healthy mother of two and I'm try to keep hope but it's been hard

Sara:

You're only at the beginning of this. It can take months to find the right treatment. Rituxan doesn't even usually kick in until after the fourth infusion. My counts were around 3k the week I had my third infusion and by the fourth week, they were 150k. That is a fast response....it can sometimes take up to 12 weeks.

There are quite a few treatments that you haven't tried yet, so there is a lot of hope! There will be something that will help. It just takes time.

Thank u Sandi...after today and finding this support group...iv been researching and reading other people experience and
what other treatment they have tried. Hopefully my doctor will find something that will work for me...thank u so much for responding...wen ur on the other end of things any advice is so great ful

I was on the other side once....a long time ago. ITP treatments are so much better now than when I was diagnosed. There are more choices and two of the newer treatments have a pretty high response rate. People usually go down the treatment line until they find the one that works for them. Rituxan could still kick in for you and if not, you go to the next one. Take this time to learn about the treatment options so you will be informed when you discuss them with your doctor.

Sara28 wrote: Hi my name is Sara I have recently been diagnosed with ITP within the last two months...so far my doctor has had me on steroids for 3 weeks and that has not helped at all...so now I did my third round of rituximad today and my platletes count is at 4 k..I have had two platletes transfusion each one only raised my platletes up by 2 k and within a few days it drops back down...in the course of two months the highest my platletes have been is 18k.. my normal platletes count is around 2kand 4 k...I'm beginning to think that there's nothing out there that can help me...plz someone tell me that there is something out there that can help me...I'm only 28 years old healthy mother of two and I'm try to keep hope but it's been hard

Hi Sara,
Sandi has given you some good advice. Rituxan can take up to 12 weeks to start to kick in, so it is way too soon to worry about whether it is working for you yet. Give it some time after all four infusions to see if it will do something with your counts. Even if it doesn't, there are lots of options for things that you can try next. Many people here have good luck with Promacta or NPlate in managing their ITP. You are in the very early stages of managing your condition and it will take some time to find out what treatments will work best for you. I've had ITP since I was a child, and I'm doing just fine and leading a fairly normal life and am still managing my ITP at age 42. You get used to it, I promise

I should also mention that lots of people deal with ITP for varying periods of time, and then achieve remissions, so there is never a guarantee about how long you may have to deal with things. Your counts could rise unexpectedly at any time.

Sara

Welcome to the club none of us wanted to join !!

As Sandi & Mom have said it can take a while for Rituximab to work, and if it doesn't there are other treatment options. I personally haven't tried it but the day may yet come.

Don't get despondent. It's bit like living on a roller coaster having ITP but it's manageable. Each of us has our own unique physiology and respond differently to treatments .

I was diagnosed almost 4 years ago at the tender age of 57. High dose prednisolone worked instantly but as soon as the dose was reduced so did my platelet count. Nothing less than 15mg a day had any decent effect on my counts. I refused point blank to stay on a dose like that as I developed steroid induced osteoporosis. I also refused point blank to have my perfectly healthy spleen removed.

The first second line therapy I tried was Azathioprine which didn't work, followed that with Mycophenolate which also didn't work.
Next I volunteered for the Fostamatinib drug trial. During which time I managed 2 platelet counts above 50 , both immediately after a dose increase, so after 7 months I was kicked off that as the endpoint was to maintain a count above 50 for at least 4 weeks.
Then I went onto Nplate (Romiplostim) for a year with 3 dose increases over that time. My count swung all over the place and I never felt 100% the whole time I took it. I gave it up at a bad job when my count dropped to 6, I was covered in bruises & suffering fatigue +++.

Just over a year I started Promacta (Eltrombopag). It took a while to work and find the optimum dose but I feel much better on it than Nplate. My counts swing a bit but not so dramatically. I've had to take a quick burst of steroids a couple of times to get my count up but generally hover between a count of.30 to 80. I'm still working part time and manage to walk a minimum of 10,000 steps every day.

Too many doctors try to normalise platelet counts which is wrong. In ITP the aim of any treatment is to keep the count above 50. If I could keep my count above 30 without medications I would but it's not the case unfortunately.

Anne
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Thank u all so much...it is very incouraging to hear all ur stories of what y'all went thru...I'm trying to keep my head high and research as much as possible...I go Thursday for another platletes transfusion and I'm gonna talk to my doctor then about other options if rituximad does not work....thank u all again for telling me ur stories.

Sara - platelet transfusions don't work for ITP so I'm not sure why he is bothering to schedule you for that. They should be reserved for bleeding emergencies.

Don't get discouraged. As other people have said, Rituxan takes time to work. I have taken it 4 times since 2005 and have had remissions between 2 and 4 years. Even though I respond well to it, it never started working until 4-6 weeks after the last infusion.